Showing blog posts tagged with: cancer

Fair is fair - right?

by Hilla Duka - View comments


That’s what we teach our kids. Either all you gets ice cream, or none of you get ice cream. If he got to play on the computer then your turn will come. Because fair is fair. And when they lash out at us and through tantrums because something's not fair, we do our best to make it fair. If everyone in your class really does have a cell phone then maybe I should get you one. But life isn’t fair, not even in the slightest. Right now, I’m trying so much not to let my kids see how hard I’m fighting to give them something they’ve never even thought they would not have - me.


Fair isn’t fair, we’re all born with different preconditions, different potentials, different challenges. And for some of us, life throws a lot, while for others it seems more of a smooth sailing. But even I - at the age of thirty five, will break down in tears and rage at the world about how unfair it is. And it’s true, it is. Breast cancer is like a game of russian roulette - it strikes out of nowhere, and it doesn’t care that you’re young, that you have kids that need you, that you’re kind of healthy. It’s not fair, but it’s life, and the only thing we can really do is deal with what life throws at us, stop whining that it isn’t fair, and get on with things. Maybe that’s what we should be teaching our kids instead?


I try very hard to believe with all that’s in me, that I will be the miracle patient. That I’ll go into remission, and just stay there, for years and years. And that then there will come a way to kill metastases: cancer won’t be incurable anymore, and I’ll go on to become a little old lady. I want that scenario to be true. But I also know that that might not be the case, that indeed it isn’t the likely case at all. And if that’s not going to happen, then I want to have made the best of the time I had. I want to have been the best me I could possibly be. Actually, I want that even if I get to be a little old lady.


I want to have left a mark, to have done some good. And so I start with myself, and I tell myself not to mope around that life isn’t fair, but to do something instead. I watch myself for those unworthy thoughts that sometimes creep into my head, and I work at being a better, nicer, kinder person. If this whole trip doesn’t go the way I want it to, I want my kids to remember, if not my voice or what I looked like, then the sound of me laughing, the feeling of me hugging them, how I would always tell them how proud I am of them. I want them to know that I worked at being a better person, and that this is a legacy I would like them to continue in their own lives. I want them to know how sacred a life is, and how I fought to stay with them.


Fair is not fair, but no-one knows the future. Maybe I will be that miracle patient. Maybe I won’t. One thing I do know, and that is that this whole experience has changed me, and I think for the better. I believe I’m a nicer person now than before I got the diagnosis, and that’s worth something, to me. Life may not be fair, and maybe we’d do well to teach our children that, rather than shield them from it all. But life will hand you good things and bad, and if we learn to take the punches when they come, maybe we can enjoy the good turns better, when they come? Because they do come.


The picture above is taken at Gröna Lund earlier this summer, before we knew anything about cancer, and the challenges facing us. Just a simple, beautiful day with the kids, all of us happy and carefree...


Milestones passed

by Hilla Duka - View comments


Milo’s lost his first tooth! A very proud little man, who’s been walking around with a wriggling tooth for weeks now, wondering when it would ever come off, has now had it exchanged for a gold coin from the tooth fairy. Big milestone passed here.


And I’ve passed my own milestone, treatment no 4 is now working its toxic ways through my body, and the blood sample I gave the day before yesterday came back showing the highest blood count (haemoglobin), since I’ve started treatment - a staggering 112 instead of my usual 95! This meant that I didn’t need a blood transfusion, so the time in the ward was a mere two hours, the shortest so far. Though no-one seems to understand why my blood count was higher this time, everyone seems to think it’s a good thing. It’s normal to have a low blood count when going through chemo as it attacks all fast growing cells, and haemoglobin, hair, skin are all fast growing. But as I have metastases in my bone marrow my haemoglobin production is poor in itself. If I try to think positive, I think that maybe my better values come from some of the metastases being altered in their progress. Since no-one knows for sure, it seems only reasonable to think positively about it. And, very importantly, it means two more bags of blood are thankfully available to someone in more urgent need of it than me!

It’s during this cycle of treatment that we will do the CT scan and see how the progress is going, and I’m hoping this is a good sign for the news to come. I can’t say I’m not nervous about it. But the tumour in the breast is visibly smaller, and I can’t feel the lumps in my neck anymore. I don’t have such a pain in my lower back as I used to, though that is most likely because of the skeleton strengthening medicin they’re giving me. The chemo is taxing, and I often have aches in my joints, and at times parts of my body feel like someone’s been going at me with a small hammer all night… Still, this is a far cry from how awful I thought it would be! I’ve managed not to have to take any of the extra medicines they’ve prescribed for side effects, so I only take the anti-nausea meds three days after treatment. Small things to be grateful for!

Colouring outside the lines

by Hilla Duka - View comments


As I put on makeup this morning, I realised that I no longer have enough eyebrows to make out where they begin. So I started drawing about where I thought there ought to be eyebrows, only to realise that I looked like an idiot… It took a few tries before I thought I got it about right, and then a few checks with old photos to make sure it looked somewhat the same. I wonder if I will get better at making up eyebrows as I go along, or if this is where all that time I’m saving on my hair is going to go…


I hate the fact that I don’t have my eyelashes and eyebrows as I used to, as they were such a big part of how I looked, in my own eyes. I spend time each day putting on makeup, not to try to be pretty, but to try to still be me. If I’m not wearing any makeup, to me I look like just another cancer patient. But when I go about my usual routine, I look like myself, only with cancer. And if I look like just another cancer patient, then maybe I am just another cancer patient, and my odds of surviving are just the same as anyone else’s - but if I look like me, then I remember who I am, and I know that I can move mountains. I’ve done the impossible before - and I can do it again, if I just remember who I am.


Today I went to give my blood sample, hoping against hope (as always) that my blood count will have gone up, but not really expecting it. If it’s too low, I’ll get a blood transfusion as well as chemo tomorrow, if it’s ok (that is basically anywhere above a hundred), it’ll just be the chemo. Of course I would prefer only getting the chemo, but I’m very happy that I can get blood when I need it, it makes a huge difference, but as we’re constantly low on supplies of blood here, I feel guilty when I have to get some, thinking it’s two bags less for someone who’s having surgery or are otherwise in dire need of it…


It’s been harder this time round than the last, no point beating around the bush. Instead of almost two weeks of feeling well, I’ve had two weeks with various aches and pains. My back hurts every day when I wake up, the skin on the back of my hand hurts to touch, and despite my efforts not to, I still worry about the checkup in two weeks time and what it will show…. And after the awful Day Three the last time, I’m quite concerned how Monday’s going to turn out.


This staying at home business is also hard to get my head around. On Monday, I did nothing but stay in bed all day, then spent all evening berating myself for not having done anything with all that time. Then yesterday, I shocked myself by cleaning the house, doing some washing and actually making cup cakes for when the kids came home from school. I was so stunned I had to sit down and have a glass of wine to recover! I know those of you who know me won’t believe it, so I’m adding some picture proof here. Three different kinds of cupcakes they were - raspberry, blueberry and chocolate. I know - clearly the age of miracles has not passed, and a good thing it is for me too!

There you go - picture proof of my super productive day! 

Feel the fear - and do it anyway

by Hilla Duka - View comments


So much of what I do these days, in manage my fears. Not just fears and anxiety about the big things, but the little ones as well. Small tasks, that before would have been so natural I didn’t even think about them, have become mountains to climb. The thing is, all of us feel this way at times. Small or big, a large part of living is to manage your fears. To feel the fear, and do it anyway.


A few days ago I went back to my workplace for the first time in over two months. The last time I set foot there, was when I came back after lunch to grab my laptop, texting my boss to tell her I wouldn’t be back that day as I had to get a blood transfusion. And strangely, I was so scared what it would be like to be back. It was something I used to do every single day of the week, going in to the office, not just for fika like I did this time, but for the full day. But now the thought of being back frightened me. The idea of seeing everyone again frightened me, made me nervous. What would it be like? But here’s the thing: I pulled myself together, went off, and it was lovely. I got to see so many people I’ve missed, and it felt so good to be back, even just for a few hours. That’s the thing with fears - when you face them, and just get on with things, they really don’t hold much weight.


Of course, sometimes they do, but what I’ve found is that the what-if’s are much more dangerous than the things you’re actually afraid of. I have only fragmental memories of the time I spent in hospital when I found out I have cancer. Mostly, I remember lying there in the middle of the night, alone and crying, because of my fears. That was actually the worse bit. Worse than when they told me they found cancer in my lymph nodes. Worse than when they told me they found it in my blood and skeleton. Worst of all was lying in a ward, alone except for two other patients. The what-if’s were the worst.


A few days ago I got a letter, telling me that I had an appointment for a CT scan of my lungs and stomach. It reduced me to tears, I completely broke down because of it, and the what-if’s started wreaking havoc inside of me. Thankfully, my wonderful brother was there at the time, and could talk me out of it before I had a complete mental breakdown, but it made me realise that this is what I have in front of me, for the rest of my life. All those unhelpful thoughts, breaking out for every new appointment, every checkup. Because even if it’s completely unrealistic that they should find that the cancer has spread now, in the midst of chemo, the truth is that one day they will. And, in all honesty, it was completely unrealistic to suspect that I would have breast cancer in the first place. I’m young, exercised (well, sort of) and had no history of breast cancer in the family. So unrealistic to me does not mean that it won’t happen to me. Not anymore. And so the fears go off. What if they found that it’s spread? What if the treatment isn’t working on the metastases? What if… But the thing is, you can’t be ruled by fear, that’s no life at all. And so we feel the fear, small or big, imagined or real, and then we get on with it anyway.


When our kids are scared to do something, we tell them not to be afraid. When Milo was scared of starting school, I was about to do the same. To tell him that there was nothing to be scared of, that everything would be fine. But I stopped myself, and realised that his fears are just the same as my own. And I can’t tell him everything will be fine, because I don’t know that. So instead, we talked through his fears, and came up with a plan what we would do in case they came true, and by the end of that conversation, he was still scared, but he was prepared to do it anyway. And in case any of those fears should come true, he has a plan how to deal with it.


At my therapists, I learned that anxiety is not a feeling. It’s a reaction to disregarded feelings, feelings pushed away and refused the space they wanted to take. In the same way, I believe fear is not a feeling - it’s a reflex, a fight-or-flight kind of thing, a reaction to feelings. And if you give those feelings the time and attention that they need, then the fear doesn’t hold such a strong grip on you anymore. Then you can feel the fear, and do it anyway.


Back to school

by Hilla Duka - View comments


Just as everything must begin somewhere, so everything must come to an end, and now our summer has too. The kids are back in school, Ilir’s back at work, and I must start to face my new life of being on sick leave, rather than pretend I’m on some sort of extended holiday. While everyone was off it was one thing, I could hide behind the beautiful weather and having the kids around. I got wrapped up in trying to give them some sort of family holiday that they would enjoy, rather than actually accept this new reality of mine. Now I can’t really do that anymore, and it’s painful, but necessary to accept, to face life head-on.  


I keep thinking, maybe I can take something up? Like crocheting, or cooking or… god knows what. It’s hard to think of myself as not being useful, but I know that most likely I wont take up crocheting or cooking, or anything else. I can’t walk the kids to or from school as it’s too far for me on most days. The truth is, there really isn’t much I could do. Oh but that’s probably not true, I’m making up a sad story that features me as a victim, and telling it to myself. How the brain loves a bit of drama, and being the victim is quite seductive. I mustn't fall into that trap. Ok, maybe I wont be taking up crocheting - my fingers are stiff and aching from the side effects of chemo, and writing on a keyboard is about all I can manage. Still, I can do other things. Indeed, I must do other things, I must keep myself busy as much as I can, and not drift into the temptation of wallowing in self pity.


Seeing everyone off this morning was painful, but it’s a sort of pain I’m grateful for. It was me facing reality rather than pretending, which I value and appreciate. The reality is that I feel quite lost without my work, I feel as if I have no real place in the world. I miss both my job and my colleagues, but most of all, I miss the person I am when I’m working. I miss being an active parent in my children’s lives, I miss a life where I worried about putting myself together in the morning and weather or not I had a dress ready for the day. I miss being frustrated with my hair for not cooperating with me… But these are feelings I must face, without self pity, and accept and then move forwards. By pretending they don’t exist, I give them so much more power, and without really noticing, I feel sorry for myself. The brain might love a bit of drama and victimising oneself, but no good will come of it, I’ve seen it (and criticised it) in others too many times.


School started yesterday for the boys, finally all three of them are together in one place again. After every summer, the school starts with a speech in the yard, and some ice cream for the kids, and parents present. Last year I had forgotten, and thought it was an ordinary day at school, so I had work planned and ended up standing there quite stressed and without a good plan for what to do with the kids. This year, I was prepared and present, ready to really be there for my kids. Only to be facing each of their teachers, looking at me with sad, empathic eyes, asking me how I was bearing up, and telling me I looked quite well, you know - all things considered. I wasn’t actually a parent there after all, I was a cancer patient, and I hated it. One teacher reassured me that the kids wouldn’t have to talk about their summer - naturally she thought it had been horrid and that he wouldn’t want to talk about it. And I thought “But he’s had a lovely summer, he wants to tell you all about it!”... It’ll take some getting used to, being seen as just the cancer and not me as a parent, but ironically, if I want to be an active parent I must get used to it and not allow it to push me away from being part of their school life.


The origin of things

by Hilla Duka - View comments


Everything begins somewhere, though it’s very often not too clear where that is.


For me, I could say that it began with a phone call  on my way to lunch. That phone call, where an unknown doctor told me to get myself to the emergency room to get a blood transfusion, certainly did change everything.


Or I can go back a day or so, to the meeting with another doctor, whom I asked, after having gone through all my symptoms, “How much of this would be explained, if the breast is cancerous?” and who looked at me with those sad, kind of empathic-but-not-really eyes that doctors save for bad news, and answered very simply “Everything”. That shook me, and it was by any standard, the start of things.


But I can go back even further, to an evening in Berlin on a work-trip, where I slipped on a patch of ice, tore of a ligament and dislocated my knee. That was the start of my downfall, physically, though I already had the cancer in my body, unknowingly. The adjustments I had to make because of my knee allowed the symptoms to hide for a while longer. Just a few months, but no one knows what difference finding it a few months early could have made. Perhaps nothing, but perhaps something. We’ll never know, and though it’s pointless to wonder about it, that doesn’t seem to stop me.


And even further back, at some unknown point, when in my breast a cell or two broke loose and started forming the beginning of a tumour. I have very little of an idea when that was, the doctor tells me most likely it happened somewhere around three years ago. I think back, trying to picture what I was doing three years ago, wondering when it happened. Again, pointless, but sometimes I find myself pondering on it as if obsessed, quite unable to stop.


It’s so hard to understand, that it is in my breasts, which nurtured my children from the day they were born, that the events that will one day take my life started. I think that’s one of the hardest things to take in with breast cancer: how can the very parts of me that gave life to my children be the same thing that threatens my own? That threatens those very same childrens right to their mother?


What I’ve learnt is that these thoughts and questions, unhelpful as they may be, demand space. They demand to be thought. The only way I can put a smile on my face, and enjoy the day that is given, is by also making time to feel the sadness, think the horrible thoughts, have a good cry and admit to myself my fears and worries. Then I can leave it behind. That way, anxiety doesn’t consume me, the panic attacks stay away, and (by the help of a sleeping pill), I can sleep through the night. That way, I can enjoy what I have, and be grateful for it.


Everything begins somewhere, even gratitude, joy, and the ability to appreciate each day have to come from something. For me, they come from making time to accept all the things that aren’t perfect.


Being weak

by Hilla Duka - View comments


Five days in to the third treatment, and this time is definitely worse than the ones before. Day three I couldn’t do anything. I mean absolutely nothing. All day was spent lying down, sleeping on and off, while nausea and pain and uncomfortableness rolled over me in waves. Breathing was a task that had to be managed. On those days, it’s hard to find anything to be grateful for, other than when evening comes and I get to go to sleep and soon it’ll be another day. Being weak is not one of my stronger points, so this is a bit of a learning curve.

Little mr big man now...

Still life goes on around me, even when I’m not really participating in it. Milo has started training for school, so for three days now he’s been heading off in the morning, together with Ilir, to get to know his new teachers and the school. He’s been kind of nervous about it - it’s a big step - but calmed down as we talked about what a good situation he’s got going for him: two older brothers in school, who’ll always have his back. We were joking about how no one was going to dare to be mean to him (which was his major concern) with two fierce brothers around, and gradually the nerves receded, and now he’s really happy and proud to be starting school. I’m sad that I’m missing it, but at the same time grateful that I am at least here when he comes home, and get to hear about his day and what he’s learnt and done. I filled out his papers for school and his schedule, and under “Anything else we should know about?” I filled in “Milo is still not speaking clearly”, then as an afterthought, I wrote, “Also, his mother is suffering from breast cancer, stage four”. Well, yes, maybe they needed to know about that too...


Most people are going back to work now, and it’s making it harder to pretend that I’m just on a really long, weird holiday. I miss my job, I miss the people there. I miss being normal. I feel like I look and behave more and more as a cancer patient, no longer strong enough to go for a proper walk, my head bald, and now my eyebrows and eyelashes are thinning out as well. I used to have hair down to my waist, thick eyebrows and long eyelashes. I used to at least be able to dress up and put on a pair of heels and still pass for decent-looking. Now, all I am is cancer-looking. That’s ok, and I’m really trying to not focus on that, but it’s harder than you think to let go, even of small stuff like that. Then add to that the effect of chemo brain, where my once so organised brain is no longer really working the same way, and I’m constantly in a haze of chemo fogs… I do feel in some ways as if I miss myself. I’m still grateful that I am here, but I wish I was more me. I try to focus on the fact that this too will pass, but as I’ve treatments lined up until February, it’s not like it will pass any time soon. And then there’s always the question of what comes after...


So, I focus on the shorter goals. Right now, it’s just getting past this first week of third treatment. Once that’s over, I should feel better again, more like myself. Then it’s managing no four and five, and then, it’s the big October checkup, halfway through the cycle of treatments. It’s the first real indicator of how the chemo is working, how much of the tumours are left. Even though it means a new bone marrow biopsy (not pleasant), it’ll be good to know how my body’s doing, to really be able to see that we’re making progress!